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Question others with Tarlov Cysts

I posted this yesterday but I think I did it as a reply instead of as a post to everyone on the site, so I am posting it again to be sure everyone sees it. Thanks for allowing me a learning curve for the site.

I have been diagnosed with Tarlov Cysts and I have been researching the subject for 8 months. It appears surgery is the most effective treatment (NINDS Tarlov Cysts info page).

Does anyone know how a layperson can find out the inside scoop on the few doctors who are doing this surgery?

What the doctor's reputation is among other doctors and in the hospitals?
What the nurses that work in and around the doctors have to say about them? For example, if another doctor's wife had a Tarlov Cyst, who would he send her to?!

I would also like to know if there is anyone out there who has had surgery and is now pain free, i.e., is the surgery a success or do they still have pain but just a different kind of pain.

Thanks so much for any help or insight you have...I just don't know where to turn at this point.

No, I have not had any feedback to my specific questions. I have not had surgery. I had one injection and that did not help. I had physical therapy and that made it worse. I am not currently seeing a doctor, as they are not familiar with Tarlov Cysts being the cause of pain. There are a number of doctors on The Tarlov Cyst Foundation site, who do agree the cysts cause pain and do treat them in a variety of ways. I am most interested in knowing if any of the current treatments have restored people to their pain free life, before TC's. I have read about the various doctors and treatments but was hoping to hear from folks who work with the doctors on a daily basis, as to their skill level and reputation among other medical professionals.

I only have one TC & it is located on my tailbone. I've been to the neurosurgeon. Had lower & upper MRI's done. I had some mild bulging disk in lower back area plus the tarlov cyst. He's adament that the burning pain is not coming from my cyst. He ran bloodwork for autoimmune disorders & inflammatory disorders. They came back negative. Basically, he's done with me. He said for me to go back to the neurologist for more testing. I told him that I have been reading info. on the internet about the cysts and I have a lot of the symptoms. He said not to believe everything you read. Maybe he just doesn't know much about them. All he told me was that if you start messing with it (surgery/aspirate it) you could do more harm than good. I'm on a nerve medicine for the burning. It is not touching it. I'm discouraged.

You are getting the same response most, if not all, people with Tarlov Cysts, have received. Do not be discouraged and do not give up looking for those who will, at least acknowledge that the TC’s do cause pain and provide you with pain meds.

Have you checked out the Tarlov Cyst Disease Foundation site yet? It is an amazing site and will give you information and comfort in your battle to find help.

Also, so that you do not think you are alone in your struggle with this, there are two talk forums where people who have TC’s share their experiences, their frustrations and the help they have or have not received. I believe you would benefit from looking at what others have to say, who are in the same situation as you.

The hardest part of this journey, for me, has been that I have had to do all the research on my own and have learned, I must be my own, strong advocate. I always thought it was the doctor’s role to figure out what was wrong and do the research and be an advocate for finding a solution to the problem his/her patient was experiencing. That is how it works on TV anyway! Ha! That is how it use to work in the medical world but times have changed and there must still be some doctor’s who think like we would like them to, but they are few and far between, when it comes to a rare disease such as TC’s. I could tell you my horror stories about my visits to an NS and a neurologist but when you check out the talk forums, you will find so many similar stories as yours (and mine) that, you will at least find, how you were treated is not the exception to the “rule”, it seems to be the standard treatment.

I do hope you can get to see even a family doctor who can give you the needed medications to get your pain under control. It will not get better and the constant pain will wear you down physically and emotionally. Perhaps you could be referred to a pain management doctor to help you while you search for the right way to treat these nasty things. My family doctor has been kind and has willing supplied me with the needed pain meds, so you might just start there.

Please feel free to reply if you wish but I am still in the learning curve myself and those at the Foundation and the talk sites are far more knowledgeable than I, or have, at least been dealing with it longer than I. You will find those who have had surgery and aspirations and other types of treatments and what they have to say about all things TC. There are those who strongly believe in only one type of treatment and others who are disciples of only certain doctors. You must read and filter it all, based on your own research until you find what sounds right for you because what works for some, doesn’t work for others.

barb-California

Quote:

Originally Posted by Annette

I only have one TC & it is located on my tailbone. I've been to the neurosurgeon. Had lower & upper MRI's done. I had some mild bulging disk in lower back area plus the tarlov cyst. He's adament that the burning pain is not coming from my cyst. He ran bloodwork for autoimmune disorders & inflammatory disorders. They came back negative. Basically, he's done with me. He said for me to go back to the neurologist for more testing. I told him that I have been reading info. on the internet about the cysts and I have a lot of the symptoms. He said not to believe everything you read. Maybe he just doesn't know much about them. All he told me was that if you start messing with it (surgery/aspirate it) you could do more harm than good. I'm on a nerve medicine for the burning. It is not touching it. I'm discouraged.

1) Do you have more then one cyst?
2) Where is it/are they located?
3) What kind of symptoms are you battling? Mine is constant burning from bottom through legs & feet. I can sometimes feel burning/tingling in hands & arms.
4) You said you are on pain meds. Can you share the type that you are on?

I feel better when I'm constantly moving/walking. I have an office job, so sitting all day can be very difficult. However, I don't want to give my job up. I'm too young for this. Laying down relieves the burning most nights.

Thanks for getting back to me. I do appreciate your feedback. It has been very helpful.

Annette - Illinois

Quote:

Originally Posted by barbhelm

Annette,

You are getting the same response most, if not all, people with Tarlov Cysts, have received. Do not be discouraged and do not give up looking for those who will, at least acknowledge that the TC’s do cause pain and provide you with pain meds.

Have you checked out the Tarlov Cyst Disease Foundation site yet? It is an amazing site and will give you information and comfort in your battle to find help.

Also, so that you do not think you are alone in your struggle with this, there are two talk forums where people who have TC’s share their experiences, their frustrations and the help they have or have not received. I believe you would benefit from looking at what others have to say, who are in the same situation as you.

The hardest part of this journey, for me, has been that I have had to do all the research on my own and have learned, I must be my own, strong advocate. I always thought it was the doctor’s role to figure out what was wrong and do the research and be an advocate for finding a solution to the problem his/her patient was experiencing. That is how it works on TV anyway! Ha! That is how it use to work in the medical world but times have changed and there must still be some doctor’s who think like we would like them to, but they are few and far between, when it comes to a rare disease such as TC’s. I could tell you my horror stories about my visits to an NS and a neurologist but when you check out the talk forums, you will find so many similar stories as yours (and mine) that, you will at least find, how you were treated is not the exception to the “rule”, it seems to be the standard treatment.

I do hope you can get to see even a family doctor who can give you the needed medications to get your pain under control. It will not get better and the constant pain will wear you down physically and emotionally. Perhaps you could be referred to a pain management doctor to help you while you search for the right way to treat these nasty things. My family doctor has been kind and has willing supplied me with the needed pain meds, so you might just start there.

Please feel free to reply if you wish but I am still in the learning curve myself and those at the Foundation and the talk sites are far more knowledgeable than I, or have, at least been dealing with it longer than I. You will find those who have had surgery and aspirations and other types of treatments and what they have to say about all things TC. There are those who strongly believe in only one type of treatment and others who are disciples of only certain doctors. You must read and filter it all, based on your own research until you find what sounds right for you because what works for some, doesn’t work for others.

barb-California

Last edited by Curious; 04-07-2008 at 08:55 PM.
Reason: mod edit required per nt guidlines re soliciating to other forums

I do have more than one but not as many as some folks have, or so it seems. I do have some other problems with my back but will just mention the Tarlov Cyst findings, unless you want more, which is ok too. Here is the quote from the last MRI. “1 cm Tarlov cyst along the right S2 nerve root.. A 1.7-cm tubular nonenhancing lesion along the right S3 nerve root may represent a nerve root diverticulum or a perineural cyst. A 1 cm enhancing lesion at S2 is minimally hyperintense on the T1 weighted images and may represent an atypical hemangioma.”

That covers the number and locations. My symptoms are severe tail bone pain and rectum pain. I also have pain in my right butt cheek. I cannot sit for long without the pain increasing and my legs (both) go numb but it is a painful numb. The cysts have caused me to have to urinate more often, or so it seems. I cannot feel when I need to have a bowel movement and have had a couple of mild accidents and many close calls. I can give more details on that if you need them but it doesn’t sound like what you are experiencing. I do not have arm/hand problems at all but others, on the sites I mentioned previously, have stated they do. When that is the case, I believe their cysts are located more in the thoracic area of the spine. My pain is a hot burning pain and I walk around with an ice pack on my tail bone/lower back most of the day. I start the day on a heating pad to get the muscles loose but w/in a few hours after moving around, I have to get the ice pack. I find relief throughout the day by switching from moving/walking around the house to sitting, then to laying down and repeating the routine. I too get relief from laying down. Some on the sites can only lay in certain positions to find relief and some cannot even stay in bed for more than a few hours due to the pain it causes. I have been practically housebound since this all started because if I do much of anything, it causes the pain to increase to the point of making me sick at my stomach. I cannot do any exercises as it brings on the incontinence and I just cannot handle that. When I cannot handle the pain, I take the Rx, Norco but only at night as I cannot stand the foggy brain it gives me. It also constipates me, which makes the pain worse, so it is a balancing act in all areas. When I am constipated and have to bare down hard, my legs go to sleep/numb and the room swirls and I feel like I am going to pass out. I have the burning pain 24/7 that I try to ignore and it is exhausting and taking a toll on my nerves I believe. IF I do go anywhere, where I will have to sit, I take my pillows, one for the lower back and one to sit on. There are some folks on the sites that have a "gel cushion" and I am going to look into that but for now, the pillows allow me to sit a little longer without having really nasty pain develop about two hours later.

There are some people on the sites who have had to go on Workman’s Comp or SSDI due to the Tarlov Cysts. I can’t recall your age but some of them were way too young to have to give up their jobs but they eventually had no choice. I notice you are from ILL, there are a few other folks on the sites from ILL too.

I hope some of this has helped. Feel free to ask more questions but, again, I am still new at this in many ways. I remain frustrated because doctors do not believe these cysts cause pain, they are wrong. I do recall saying I thought surgery was the only solution, in a prior posting but I am not sure I would say that now. There is aspiration of the cysts that have given some folks relief, some for only 3 days and some for many months and counting. There are doctors who try to fill the cysts with a glue of sorts but that doesn't have a good track record and if surgery is needed later on, it makes the surgery more complicated and the results less promising.

I am watching both the talk forums and the TC Foundation sites to see how people are progressing after their treatment, before I move forward to seek help. I say that now because I have a very high pain threshold and have been able to hang on while I watch for results. There are those who do not have a choice it seems and go for treatment asap so I don't want to wait too long - hard to know what to do or when to do it.

Barb-CA

Quote:

Originally Posted by barbhelm

I posted this yesterday but I think I did it as a reply instead of as a post to everyone on the site, so I am posting it again to be sure everyone sees it. Thanks for allowing me a learning curve for the site.

I have been diagnosed with Tarlov Cysts and I have been researching the subject for 8 months. It appears surgery is the most effective treatment (NINDS Tarlov Cysts info page).

Does anyone know how a layperson can find out the inside scoop on the few doctors who are doing this surgery?

What the doctor's reputation is among other doctors and in the hospitals?
What the nurses that work in and around the doctors have to say about them? For example, if another doctor's wife had a Tarlov Cyst, who would he send her to?!

I would also like to know if there is anyone out there who has had surgery and is now pain free, i.e., is the surgery a success or do they still have pain but just a different kind of pain.

Thanks so much for any help or insight you have...I just don't know where to turn at this point.

I am 42 & this started 5 mo. ago. I do know that I had the cyst 3 years ago, but at that time, the physical therapist didn't make any big deal about it. Plus I didn't have any complications except for chronic lower back pain at that time.

Here's my point..........I don't want to get to the point to where it is disabling for me. I am too young for that. I still work & enjoy my job. I love working in my yard in the summer, taking vacations, etc. I'm trying to be optimistic about it. I do pray a lot & always seek God for guideance/direction/healing. I'm not giving up hope. I want to continue to enjoy life, travel, & enjoy my grandsons.

I am so sorry that the disease has confined you to your home. I will keep you in my prayers as well. I do know God is BIGGER than all things. If it's His will, He can heal each of us. God never promised us a good life here on earth. He did promise that each of us would go through trials. And with trials, it builds strength, our character & helps us to perservere another day and helps us to help others going through similar situations. Just like us.

All the information you have provided has been helpful. Thank you. In the meantime, until we both find the right Drs. who are experienced with these cysts, I will keep praying for healing for both of us. You'll be amazed of what the power of prayer can do.

Again, thanks for all your info. & support.

Annette - IL

Quote:

Originally Posted by barbhelm

Hi Annette,

I do have more than one but not as many as some folks have, or so it seems. I do have some other problems with my back but will just mention the Tarlov Cyst findings, unless you want more, which is ok too. Here is the quote from the last MRI. “1 cm Tarlov cyst along the right S2 nerve root.. A 1.7-cm tubular nonenhancing lesion along the right S3 nerve root may represent a nerve root diverticulum or a perineural cyst. A 1 cm enhancing lesion at S2 is minimally hyperintense on the T1 weighted images and may represent an atypical hemangioma.”

That covers the number and locations. My symptoms are severe tail bone pain and rectum pain. I also have pain in my right butt cheek. I cannot sit for long without the pain increasing and my legs (both) go numb but it is a painful numb. The cysts have caused me to have to urinate more often, or so it seems. I cannot feel when I need to have a bowel movement and have had a couple of mild accidents and many close calls. I can give more details on that if you need them but it doesn’t sound like what you are experiencing. I do not have arm/hand problems at all but others, on the sites I mentioned previously, have stated they do. When that is the case, I believe their cysts are located more in the thoracic area of the spine. My pain is a hot burning pain and I walk around with an ice pack on my tail bone/lower back most of the day. I start the day on a heating pad to get the muscles loose but w/in a few hours after moving around, I have to get the ice pack. I find relief throughout the day by switching from moving/walking around the house to sitting, then to laying down and repeating the routine. I too get relief from laying down. Some on the sites can only lay in certain positions to find relief and some cannot even stay in bed for more than a few hours due to the pain it causes. I have been practically housebound since this all started because if I do much of anything, it causes the pain to increase to the point of making me sick at my stomach. I cannot do any exercises as it brings on the incontinence and I just cannot handle that. When I cannot handle the pain, I take the Rx, Norco but only at night as I cannot stand the foggy brain it gives me. It also constipates me, which makes the pain worse, so it is a balancing act in all areas. When I am constipated and have to bare down hard, my legs go to sleep/numb and the room swirls and I feel like I am going to pass out. I have the burning pain 24/7 that I try to ignore and it is exhausting and taking a toll on my nerves I believe. IF I do go anywhere, where I will have to sit, I take my pillows, one for the lower back and one to sit on. There are some folks on the sites that have a "gel cushion" and I am going to look into that but for now, the pillows allow me to sit a little longer without having really nasty pain develop about two hours later.

There are some people on the sites who have had to go on Workman’s Comp or SSDI due to the Tarlov Cysts. I can’t recall your age but some of them were way too young to have to give up their jobs but they eventually had no choice. I notice you are from ILL, there are a few other folks on the sites from ILL too.

I hope some of this has helped. Feel free to ask more questions but, again, I am still new at this in many ways. I remain frustrated because doctors do not believe these cysts cause pain, they are wrong. I do recall saying I thought surgery was the only solution, in a prior posting but I am not sure I would say that now. There is aspiration of the cysts that have given some folks relief, some for only 3 days and some for many months and counting. There are doctors who try to fill the cysts with a glue of sorts but that doesn't have a good track record and if surgery is needed later on, it makes the surgery more complicated and the results less promising.

I am watching both the talk forums and the TC Foundation sites to see how people are progressing after their treatment, before I move forward to seek help. I say that now because I have a very high pain threshold and have been able to hang on while I watch for results. There are those who do not have a choice it seems and go for treatment asap so I don't want to wait too long - hard to know what to do or when to do it.

I do apologize. I re-read your note, it looks like you are able to get out & do some things & you are not totally confined to your home. Sorry about that.
I do know how frustrating it is not having complete quality of life back.

Again, I am thinking of you & will continue to pray for healing.

Annette - Illinois

Quote:

Originally Posted by Annette

Hi Barb,

I am 42 & this started 5 mo. ago. I do know that I had the cyst 3 years ago, but at that time, the physical therapist didn't make any big deal about it. Plus I didn't have any complications except for chronic lower back pain at that time.

Here's my point..........I don't want to get to the point to where it is disabling for me. I am too young for that. I still work & enjoy my job. I love working in my yard in the summer, taking vacations, etc. I'm trying to be optimistic about it. I do pray a lot & always seek God for guideance/direction/healing. I'm not giving up hope. I want to continue to enjoy life, travel, & enjoy my grandsons.

I am so sorry that the disease has confined you to your home. I will keep you in my prayers as well. I do know God is BIGGER than all things. If it's His will, He can heal each of us. God never promised us a good life here on earth. He did promise that each of us would go through trials. And with trials, it builds strength, our character & helps us to perservere another day and helps us to help others going through similar situations. Just like us.

All the information you have provided has been helpful. Thank you. In the meantime, until we both find the right Drs. who are experienced with these cysts, I will keep praying for healing for both of us. You'll be amazed of what the power of prayer can do.

I am 42 & this started 5 mo. ago. I do know that I had the cyst 3 years ago, but at that time, the physical therapist didn't make any big deal about it. Plus I didn't have any complications except for chronic lower back pain at that time.

Here's my point..........I don't want to get to the point to where it is disabling for me. I am too young for that. I still work & enjoy my job. I love working in my yard in the summer, taking vacations, etc. I'm trying to be optimistic about it. I do pray a lot & always seek God for guideance/direction/healing. I'm not giving up hope. I want to continue to enjoy life, travel, & enjoy my grandsons.

I am so sorry that the disease has confined you to your home. I will keep you in my prayers as well. I do know God is BIGGER than all things. If it's His will, He can heal each of us. God never promised us a good life here on earth. He did promise that each of us would go through trials. And with trials, it builds strength, our character & helps us to perservere another day and helps us to help others going through similar situations. Just like us.

All the information you have provided has been helpful. Thank you. In the meantime, until we both find the right Drs. who are experienced with these cysts, I will keep praying for healing for both of us. You'll be amazed of what the power of prayer can do.

Again, thanks for all your info. & support.

Annette - IL

Hi Annette and Barb,

I am 40 years old and was diagnosed in April with a large Tarlov Cyst that starts at my tailbone and has grown through the Sacral bone. I have been to 2 surgeons that will not touch this but both have instructed me to seek a surgeon that will. I went to a surgeon in Seattle last week and was told it was between 3 and 4cm in size (the biggest one they have seen yet). I was also told that I was a candidate for surgery but the risks involved are very scary. Basically, the decision is up to me and there are no guarantees. The surgeon's name is John K. Hsiang, MD, PhD and was recommended by another surgeon at Stanford. He's done 10 surgeries in 2 years and has a pretty good success rate but was very honest and told me that I could be that one that doesn't work out too well. Appreciated the honesty but not really what I wanted to hear. I am still going to check out Dr. Donlin Long at Johns Hopkins who is supposed to be the best. There is also another doctor in Kansas City named Dr. Frank Feigenbaum...both of them are my next step.

Personally, I am still able to work but the pain is getting increasing difficult to deal with. I have burning in my tailbone and sciatic nerve pain down both legs as my cysts is located in the middle of the sacram. I have been seeing a pain management specialist here in Portland, OR at OHSU. I am on 200mg of Tramadol daily and so far it has allowed me to keep working but that's about it. I am unable to exercise or really do anything other than sit or lay down.

I am continuing my search for the right surgeon as letting this grow any larger could cause permanent nerve damage to the bowl and/or bladder. As I find more information I will post the outcome.

If anyone out there has had the surgery, I would really like to hear what procedure was done and if it worked. According to the surgeon I saw last week, there is not much info and they are just now collecting data. Long term results of surgery are not available.

My thoughts are with you both and know you're not alone. From what I've been reading there are alot of us out there seeking answers.

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